A weblog devoted to one family's life with autism in Alberta, Canada. A place for us to vent and perhaps pass on wisdom as we learn it to others beginning the same journey.

Saturday, July 19, 2014

Christian Wright and Autism Speaks

You can click above to watch a trailer of Autism Speaks' new film, Sounding the Alarm. The film is now available on Netflix for free if you are a subscriber. Like all things in the world of Autism Speaks, it is designed to educate and inform, and likely make neurodiversity autistic self-advocates get pissed off and write another scathing anti-Autism Speaks post on their blogs.

I have written before that the autism spectrum is now so wide it has become meaningless, pitting the parents and friends of people who have very severe autism against the high functioning autistics of ASAN who function quite fine in society, thank you very much. Although diagnostically, severe and very mild autism share features, the day-to-day reality is so different that we may as well be talking about two completely separate disorders (and therein lies the rub - for the neurodiverse crowd, there is no disorder, just a difference.)

Most parents of children with severe autism are sympathetic and supportive of Autism Speaks, because although they do good work for everyone on the spectrum, they tend to focus on the families and people with severe autism and present that reality. I do not particularly understand why this ticks the higher-functioning crowd off, because if your autism is not causing you disability (and I would argue if it does not, you don't have it according to the DSM-V), why should you care other than the "autism" label being tainted with severe autism realities?

Many people criticize how Autism Speaks uses their funding and for good reason. They spend too much money on research and salaries and not enough on communities and individuals. This is changing, but not quickly enough. However, one cannot dismiss the awareness and education Autism Speaks has brought to the world, and this is good enough for people to support them, in my mind.

Christian Wright has severe autism, and as a result, his grandparents founded Autism Speaks. Although I do not celebrate how much autism impacts Christian's life or that of his parents or grandparents, I do think his life story so far can be very guilt-relieving for many parents. Christian was diagnosed early, and despite the best care money can buy, including ABA, speech therapy, OT, and DAN protocols, he remains severely autistic, non-verbal (he uses speech output devices) and has behaviour challenges. Although early intervention and treatment works for all children to some degree, there is huge variation on response (due to cognitive ability). What I like best about Christian's story is that you can do everything right as a parent and still have a kid with severe autism. On the other hand, a child could receive minimal treatment and make huge gains, relative to someone like Christian.

Does this mean autism treatment is meaningless? Not at all. But it does bring wide attention to the fact that autism is a lifelong disorder for most, and severe autism may not be ameliorated in a big way by treatment. Every gain made in autism treatment is worth fighting for, absolutely, but we must also be prepared to give a meaningful life for those who have severe autism, and recognize that every skill gained is a gift. This is what Christian's life shows to me at least, and it is a message we need to hear - not just the feel good autism stories about brilliant quirky young men and women. Those stories are indeed worth telling, but you only need to talk to families with both sides of the spectrum in their houses to understand that they are not the same realities. People need to understand this, and I am happy Autism Speaks is getting that message out.